Sleep Disorders And Pots

[Eli6596]

Hi

I sometimes have difficulty falling asleep and awaken more than once during the night, often after a dream. I know that sleep disorders occur in POTS. Dr. Low says that there is not a specific sleep disorder associated with POTS.

If you have had a sleep study, what was your sleep disorder diagnosis? For example, sleep apnea or anyone with REM sleep disorder? Does anyone with POTS have sleep apnea WITHOUT being overweight?

Thanks,

Karyn

[DancingLight]

Karyn,

I hope that others will chime in with answers to those specific questions you asked.

I have had insomnia and cannot sleep without Ambien (and sometimes still don't sleep) for 7 years now. I have tried (and I mean, really, really, really searched and tried) to find other alternatives to Ambien--all of the other choices out there--and nothing touches the insomnia. I also have done all of the 'good sleep hygiene' stuff.

I am currently fighting medical assistance in my state (PA) and have already had one hearing and will have another b/c they are denying the Ambien as 'medically necessary'

I have never had a sleep study done. None of my POTS doctors have ever seemed to feel it was necessary to do.

Sunfish does have sleep apnea without being overweight.

I hope that folks can clear this issue up a bit for me. Or maybe even point me to a research article that specifically talks about POTS and sleep issues.

My understanding has always been that the ANS dysfunction function is the REASON we have sleep problems. That the ANS dysfunction is the underlying cause. I know you are a neurologist...so feel free to chip in on my commentary here!

But, when I had my trial the doctor was like, well that's not a reason for your sleep problems. Okay, not like the SSI doc has a clue, but that is another story. He also told me that there is NO LINK b/w CFS and ANS disorders. I wanted to scream thourhg the phone, but my lawyer had told me to keep my mouth shut!

Oops, this got long.

Emily

[Ernie]

Hi,

I have sleep apnea, insomnia, restless leg syndrome, sleep paralysis and possibly a REM sleep disorder. I have had 4 sleep study done in the last year and I have another one coming up in July for the REM sleep disorder hypothesis.

[futurehope]

I had a sleep study done this past September, 2005. I have insomnia, no sleep apnea and no problems with stage 4 REM sleep. I have restless leg syndrome (though not too bad).

I have tried sleep meds in the past.

Currently, I do not take medications to sleep. I try to get enough iron in my diet to keep the RLS at bay. (Low iron stores were noticed in my blood work for the sleep doc)

I do not take naps unless I absolutely cannot stand it. Then I allow myself a 20 minute nap.

I go to bed and wake up at the same time.

I only use my bed for nighttime sleeping, not for watching TV or reading or anything else.

I do not allow myself to get "over stimulated" before bed.

I do not eat anything or take any meds that can be a stimulant.

I've probably forgotton something, but I can tell you that the above stuff is VERY difficult. The entire process of "reprogramming" myself took about 4 - 5 months.

Anyhow, last night I actually slept for about 9 hours straight without sleep meds or anything. I was SOOO happy. It was the first time I slept that long straight through for a very long time. (I did have a 20 minute potty break in the middle of the night). I hope I can keep sleeping well.

I hope you come up with something that helps you sleep. It's very difficult to have POTS and so much worse if you do not sleep well. Let us know what yuou decide.

[Sunfish]

hi karyn -

i don't have the POTS diagnosis anymore but rather autonomic failure, but like em (dancinglight) said, i do have sleep apnea. and while i'm actually a few pounds over weight these days my apnea began when i was underweight so it's definitely not a weight issue for me...my docs agree.

my apnea is mixed (part central & part obstructive) and i use a CPAP machine. honestly treatment has not made me feel better at all during the day but for many (with apnea) it makes a HUGE difference. i sleep MUCH better though since getting hooked up to the machine, meaning i don't wake up a million times through the night. that was my most prevalent symptom & until my new neuro (autonomic doc) sent me for a sleep study it was dismissed by multiple docs as "just" sleep-maintenance insomnia. i had tried several sleep meds but they didn't help &/or made things worse. a bit scary since sleep meds can actually be dangerous forthose with untreated apnea.

i did not have the more common/stereotypical apnea symptoms though &/or they were dismissed/blamed on other things. i have never snored in my life. but until a year or so ago i was always a sound solid sleeper & then i started waking up continuously throughout the night. i actually had a period of major insomnia first that i blamed on malnutrition/ major unintentional weight loss (due to major GI issues) and when it subsided i "slept" but continously woke up.

i had some trouble falling asleep too and all of the "sleep hygeine" in the world didn't make a difference. retrospectively i think my trouble falling asleep was b/c "sleep" was such a hassle for me with all of the awakenings so that i honestly dreaded it. as soon as i treated the apnea any difficulty with falling asleep (which was not always) is gone.

unfortunately i'm now sleep WAY too much but that's another story for another day.

my previous autonomic doc (neuro) in maryland said he once sent several of his patients to a sleep doc & they each had some type of sleep disorder but each was different. he considered it part & parcel with autonomic dysfunction. none of them had apnea though & he never mentioned that as a possibility with me. i wish he had but that's water under the bridge.

hope this helps & good luck,

melissa

[corina]

karyn,

i've been having sleeping trouble for i don't know how many years now. i once tried a sleeping med but didn't like the idea of having young children who could come out of bed in the middle of the night and me not hearing them. i learned to live with it which is possible because i don't have a job anymore, so i don't have obligations except for getting my children to school at time. it often happens that i fall asleep 5 minutes before the alarmclock goes.

no doctor ever suggested a sleep study but i do think there's something wrong. i blame it on the ans (like em) which i think is most plausible. and it varies vey much. there are times (years) that i can't sleep until 3, times (years) that i fall asleep easily and wake up at three until daybreak and times (like one or more months) where i sleep and sleep and sleep and sleep.

i would be very interested in the answer, but it doesn't keep me awake anymore

corina

[Eli6596]

Hi everyone,

Thanks for all of your stories. I am thinking about asking my primary care physician to order a sleep study for me, and your answers have helped me to think that it might show something.

I know that sleep disorders are seen in POTS but I don't know anything more than that. I don't think that there has been research into it. I attended the American Academy of Neurology conference in 2005 and asked the panel of autonomic nervous system speakers about sleep disorders in POTS. THe only response was that "yes, they occur and often it is sleep apnea"

To me it makes sense that we would have sleep problems because of sympathetic nervous system overdrive, too much adrenaline. The sympathetic nervous system is responsible for "fight or flight" when we are in danger. The last thing your sympathetic nervous system would allow in a dangerous situation would be sleep.

I wish I had the energy to do research on POTS.

Karyn

[corina]

hi karyn,

i too wish we could do research (although i'm not a researcher and don't have a university grade or anything), it's just that it seems to me that it is very interesting and would help a lot of people when more research was done.

well, my son promised me to do research when he's a doctor. think i have to wait for him to grow up, as he's only 11, but determined to become a doctor

when you do find some answers i think we would be very interested in hearing, but we all know the energy problem, so don't rush yourself!

corina

[michiganjan]

I have POTS. I had a sleep study done several years ago. The result was that I do not sleep efficently. I really don't know what that means.

The reason I had the study done was becuase during the time I am falling asleep, I will often jerk and shout. It is like a startle accompained by a Yell. It sounds like HUH! Sometimes it is more of a soft scream--AHHH!

When this happens I sometimes feel like I have been asleep a long time, but if I look at the clock it is always just a few minutes after I lay down so it seems to be specific to the falling asleep part.

If anyone reading this has ever heard of this symptom, please let me know what you know. I remember at the time after the sleep study I was told I do not have apena, but the funny thing is that twice in the ensuing years, I have gotten a questionnaire to fill out about my apena from the center that did the study.

[DancingLight]

Jan,

Could what you are describing be attributed to what is called Myoclonus?

Do you have it lying on your back, side or both?

Do you ever have it other times?

Just wondering....I have myoclunus type symtpoms and man, the Klonopin I started has nipped it in the bud! Yeah!

Emily

[briarrose]

I have had sleep problems but none of my doctor's have ever offered a sleep study.

I was first given Trazadone in a low dosage which left me hung over all the time. Now occasionally I take Sonata. Sonata usually helps me get to sleep, get about 4-5 hours of sleep and then wake without feeling too hung over. I find that I use 12.5 mg of Benadryl more often to help me sleep then anything, however it tends to leave me feeling hung over too.

My sleep problems come in spurts usually. The last few nights have been horrible. I'll go to bed dead tired unable to keep my eyes open a minute longer, only to wake 2 hours later wide awake and then been up all night before I can fall back to sleep again.

Several years ago I had constant periods of time where I would just fall asleep at a drop of a hat, I learned to carry a sleeping bag, pillow and water in my car in case I ever have to pull over and sleep suddenly. It got so bad that I wouldn't ever take my kids anywhere in the car unless another driver was with me.

Sometimes I feel that my sleep problems are due to temperature, either extreme cold or hot. I can't fall asleep if I'm too cold and some nights I'll wake up and my skin feels like it's on fire. A friend of my stopped by yesterday morning (3 am) after work and was lying next to me, he went to put his arms around me and my body heat woke him up, he said I felt like I was on fire. Sometimes my core is sweating hot and my extremities are like ice, go figure.

None of this probably helps answer your questions but I would recommend a sleep study especially since you were already thinking about it.

You are your own best judge!

Take care

Steph

[Eli6596]

It just amazes me that so many of us have sleep problems. It is particularly bothersome since we already have so much fatigue. Thanks again for everyone's input

Michigan Jan, jerks of the limbs while falling asleep is not uncommon. It used to be called myoclonus but the terminology has changed to "periodic limb movements of sleep" (PLMS). I have never had anyone describe yelling out during the jerks but perhaps it is just a nonspecific startle reaction in response to the surprise of the jerk. PLMS can be associated with restless legs syndrome or sleep apnea, but sometimes they occur in "normal" patients too. PLMS only need to be treated if they interfere with sleep. A neurologist or even family doctor may offer medication.

Karyn